Carb-free, taste-full.

V is starting to cook a little here and there. And let me tell you, she makes kickass scrambles. Driven by necessity of finding an appetizing and filling carb-free meal to eat when BG is high, she created this beauty. Eggs, cheese, avocado, bell pepper and sprinkles of sriracha. It tastes as good as it looks.

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This GF part of our life

This is a familiar scene for us: waiting for the doctor. And when you are in the “Buy One Autoimmune Disorder, Get One Free” club, like us, you get to experience this scene more often.

Today was V’s annual GI follow up. Things are OK. The antibodies are still not at normal levels but continuing to trend down. The doctor told us that they may not get to a normal level because adhering to a strict GF diet is hard unless you don’t eat outside of the house and maintain a full GF house. Can’t agree more! We are very careful both at home and outside, but accidental cross contamination happens sometimes. But everything else is looking good, V is not experiencing any other/new/troubling symptoms, so the doctor is not concerned and we are to stay the course. That’s a relief because between endocrinologist, dentist, orthodontist, and allergy and asthma specialist, V has some kind of medical appointment just about every month. We will gladly keep our GI visits to once a year.

Bonus good news: unbeknownst to us, when V got her Celiac panel done last week, they also did her A1C. And it’s pretty darn good, which earned V enthusiastic praise from the GI doc.

Snapshot of our life

Just another morning. Unfinished cup of coffee waits for me as I assist with pod change. Diabetes paraphernalia everywhere on the table. Insulin vial. Sugar bowl close to it, lol! Two old pods. Why two? I can’t remember. Dog photobomb. He always photobombs, he’s an attention hog. It’s totally not normal and yet completely normal. This is our normal.

Diabetes Awareness Month Blitz

Oh hi there! I’m still around. You know, still thinking about all the blog posts swirling in my head and not making it into actual blog posts. Too bad telepathy doesn’t work. But…

I’ve decided to try a reboot and what can be a better opportunity than now, during Diabetes Awareness Month? To this end I am going to post something every day. Now, now, lower your expectations. By “post” I mean it can be just a photo, or a meme or a quote. I do have more

substantial things to write about as well. And I also finally went ahead and downloaded the app so I can post from my phone. My old trusty Mac is getting older and slower and less trusty.

I look forward to getting back to blogging. I’ve missed it. If there’s anything you’d like me to write about, please let me know in comments. I may also have Vic do a guest post. She’s 13 now (!!!) after all. She reads this blog and she has every right to contribute to it. If there’s anything you’d like her to write about, or make a video of, also please let me know in comments.

I’ll leave you with a photos of kids’ Halloween candy loot. Many parents dread the post-Halloween overabundance of candy. We welcome it. I consider it replenishment of fast acting sugars stash. Though I am a little disappointed to not see many smarties there. Hmm. Also, note the photobomb of Dexcom sensor boxes on the couch. I’ll talk about our G6 experience in one of the posts.

Five Years of T1D

5/22/18 marked five years since T1D diagnosis. It’s hard to believe that five years have already done by. In five years, our family turned into T1D (and gluten-free) pros. So this Diaversary was a cause for celebration of living well with and despite T1D and Celiac.

The morning of 5/22/18 started with a breakfast complete with a heart-felt whipped cream message, and V sporting her new awesome T-shirt. Pop quiz: Who can tell me what the T-shirt design means?

V wanted to mark the day by getting a treat from Starbucks. Unfortunately it was thwarted by diabetes…

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The trip had to be postponed until the following morning. But fear not, V got to check off her bucket list wish of showing up to school with a cup of Starbucks in hand.

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Then the following day came V’s quarterly Endocrinology appointment. I was curious about her A1C. Her meter and Dexcom readings were suggesting improvements. I was also curious about some other goals that V was working really hard on. When V’s endocrinologist walked into the exam room, she was practically beaming at us. She was so pleased with everything. As she was gushing praise on V for doing a great job, I tried to peek at the paper in her hand with A1C result scribbled on it. Since I was looking at it sideways and upside down, I decided that I was not seeing it right. I didn’t believe it until the Endo announced it. 6.8! V’s best A1C ever!!!

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Better yet, the Endo was also pleased with the range of V’s numbers, which is a different way of measuring quality of BG┬árather than only looking at the average. And there has been progress with the other goals V had been working on. In other words, success on all fronts!

The Endo suggested that we really ought to celebrate, and who are we to go against medical advice? A couple of days latter we hit our favorite breakfast joint, where V feasted on amazing gluten-free Cinnamon Roll pancakes. 100% bolus-worthy!

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As V’s Diaversary Fest was wrapping up, we decided to update our T1D and GF family photo, with all four of us wearing our matching amazing T-shirts.

 

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So, FU T1D! Here’s to 5 years of kicking its butt, and may V have her entire lifetime of living well with it!

(P.S. If you still don’t know what the T-shirt means, please guess in comments!)

Flying Blind

“So, Mom, I have a question. Umm, what’s my insulin to carb ratio?”

V remained in her seat and waited for all of her carpool buddies to exit the car before asking me a little sheepishly. And confessed that she left her PDM (pump remote) at home. This was the first time in four years of pumping that she forgot to bring PDM to school, though we’ve had a number of close calls. OK, let’s problem-solve. I told her what the ratio was. She keeps insulin and syringes at the health office, so she would be able to give herself a shot to cover lunch. I reminded her that she could go off of Dexcom data (continuous blood glucose monitor.) “Umm, I left my phone with the PDM.”

Oops. Dexcom transmits readings to her phone. If her phone is at home, she has no way of knowing what her BG readings are.

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On the left is the PDM, which also acts as a BG meter. On the right is V’s phone displaying Dexcom data. When the numbers match, it’s call a Unicorn. When BG is 100 it’s also called a Unicorn. Therefore you are looking at a rare double Unicorn and it’s a thing of beauty.

So, without access to Dexcom data she’d have to test to know her BG. I was thinking hard and fast. I just happened to have a case with extra supplies with me, which had an extra meter. I found it, turned it on to test it and… Dead battery. But wait, I had an extra battery! I was standing in the school parking lot, fumbling with the battery and I could not take it out for the life of me.

“Forget it! I think you have an extra meter in the health office.” I knew for a fact that she had a meter for ketone strips. There was a good chance she had compatible blood sugar strips with it too.

I sent her off to school and hesitated for a few minutes before driving away. It was 8:40 AM and I had to be at work by 9. I could

A. Go back home, get her stuff and bring it to her, and be really late to work. OR

B. Let her go by feel and manage with supplies she had at school. It was a short day anyway, so I’d be picking her up about 4.5 hours later.

Her morning BG was in good range, her pod would continue to deliver background insulin regardless of where the PDM was, and she had supplies at the health office. She could give herself a shot to cover lunch carbs. And there were helpful staff and other resources at school, in the event something bad were to happen. I took a big breath and decided, for better or worse, to let her fly blind, and drove off to work.

At about 12 I noticed a missed phone call from a different number and a voice message. “Mom, I’m calling from my friend’s phone. There are only ketone strips here. I don’t have test strips for this meter so I can’t test.”

Well, shit.

I took out the spare meter again, and this time I was able to figure out right away how to replace the battery. It’s amazing how much better your brain works when you are not in a big hurry. I would be picking up V and her brother from school in about an hour. She could hang in there.

As I was driving to pick up, V called me again from someone else’s phone. “Yes, I got your message. I was able to replace the battery so we can test your BG when I pick you up. I am on my way. See you in a few minutes.”

When I picked up the kids, V told me that she gave herself a shot for her lunch plus an extra couple of units just in case. I pulled out the meter and reached into the spare supplies bag to get test strips except… they were not there! Murphy’s law never fails! Back to square one. I drove the carpool buddies home and then hesitated again. We would normally drive straight to piano lesson and I had no extra time to spare. I could

A. Go home first to grab V’s stuff and be very late for piano lesson. OR

B. Continue to fly blind for another hour-plus.

V was feeling OK. She ate lunch, so she was not starving. She was not experiencing any symptoms of high or low blood sugar. We had plenty of fast acting sugar with us. I took a deep breath and again, for better or worse, decided to continue flying blind.

V turned away from me looking upset. “You have no idea how stressful it is to not know what your blood sugar is! I already felt low in the morning and treated even though I didn’t know if I was actually low!” Good decision, kiddo!

I think it’s the longest she’s ever gone not having any information about her BG and going completely by feel. I do not doubt it was very stressful for her. To be honest, I was pretty nervous too, but proceeded to drive to piano lesson anyway. I have faith in V’s ability to listen to and trust her body, and lately she has been feeling both her highs and lows more consistently. And I have faith in our collective ability to deal with whatever situation may arise. If she felt low, we would treat. And if she felt high, while it’s not ideal, we could wait an hour or two before giving a correction. It would be OK.

Piano lesson was uneventful. When we got home, V immediately beelined for her PDM and tested. 60. Whew. *

“I can’t tell you how happy I am to finally test my BG!”. Not the words you hear often from a T1 tween.

File this under “lesson learned.”

Also, file this under “all is well that ends well.”

Also, file this under “go straight to D-Mom hell for being so reckless.”

*60, while considered hypoglycemia, is not necessarily a bad number for V, nor it is necessarily an indication of her BG dropping even lower. I know of at least a few T1’s who consider 60’s to be within acceptable range for them, just as I know a number of T1’s who cannot be below 70+. Sometimes we let her ride it out in the 60’s as long as she is feeling well, not trending down, not doing any physical activity, and does not have any active insulin in her system. At times she feels utterly crappy in the 60’s, and then we treat immediately regardless of circumstances. There does not seem to be any rhyme or reason. Why? Diabeetus, that’s why!